Childhood, Adolescent and Young Adult Cancer Survivors - CRN Feasibility Pilot

Substantial advances in the treatment of childhood, adolescent, and young adult cancers mean that approximately 75% of individuals diagnosed with cancer as children, adolescents, or young adults will survive at least five years after their diagnosis. Ongoing monitoring of this growing population has led to the recognition that survivors experience adverse effects of their cancer and cancer treatment long after their treatment has ended. The Childhood Cancer Survivor Study has contributed enormously to our understanding of these adverse effects, yet is limited by a focus on a subset of cancers in those aged 20 years and younger; small numbers of minority group participants; lack of data on the first five years after cancer diagnosis; and use of self-reported outcomes. The populations and data resources of the Cancer Research Network present a unique opportunity to overcome these limitations. Therefore, our goal is to use the Virtual Data Warehouse to explore the feasibility of studying childhood, adolescent and young adult cancer survivors by confirming that cancer incidence from electronic data at two CRN healthcare delivery systems are comparable to national data and examining how long survivors can be followed in these systems. Specifically, for individuals diagnosed with cancer at age 39 years or younger from 1997 to 2006 while enrolled at Group Health or Kaiser Permanente Northern California, we aim to describe their: (1) demographic characteristics, tumor types, and treatments received and (2) pre- and post-cancer diagnosis enrollment patterns, including how they vary by demographic characteristics, tumor types, and treatments received. We will model our cohort study methods on those used by Terry Field and others in their study of adult cancer survivor retention in the CRN (JNCI 2004). This pilot data then will be incorporated into a R01 grant proposal to study patterns of first course of treatment, five year survival, late effects, and utilization among survivors of childhood, adolescent, and young adult cancers.

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